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Chronic Pancreatitis

In 2011, at the height of my struggle with chronic pancreatitis and before my transplant surgery, my daily pain hovered at a 6 or 7 out of 10 on the pain scale even with strong opiates like Fentanyl and Oxycodone in my system. As difficult as it was to function through the pain, without these medications I would have been bedridden and suicidal. That’s not hyperbole – it’s fact.

Even then I was beginning to see the tide turning on how chronic pain patients were being treated, and while I was fortunate to have had a primary physician dedicated to maximizing my well being, I was often subjected to judgment, dismissal and disdain by others within the medical establishment who assumed that I was a drug-seeking addict. Despite diligently following all the “rules” such as taking my meds exactly as prescribed and getting my prescriptions filled by the same doctor every time, the suspicion remained.

But – and this is a huge qualifier – I was able to get the meds I needed to bring the pain down to a level that I could live with and ensure some quality of life. For far too many chronic pain patients today this is no longer an option. In our zeal to stem the bleeding from the opioid addiction tearing at our country, we have sacrificed the wellbeing of responsible patients who rely on certain opioid medications to simply function, and who deserve some measure of dignity and humanity from a healthcare system with the power to heal or harm.

Not everyone who uses prescription opiates is addicted. Those who take opiates on a regular basis become physically dependent on the drug and will experience certain withdrawal symptoms as the drug leaves their system. That is not the same as addiction. There are many non-addictive medications that pose the same risk for withdrawal if stopped suddenly – but doctors wouldn’t dream of putting a patient through such unnecessarily inhumane treatment in these instances. They would weigh the risk/benefit to the patient and if appropriate, titrate them slowly off the medication to lessen their discomfort.

After my transplant surgery, my pain was no longer crippling and I no longer needed high levels of narcotics. It took close to a year (after 7 long years of daily use) to titrate completely off both the Fentanyl and Oxycodone. Not because I was addicted, but because my doctor rightly understood the need for a gradual reduction to allow my body to adjust to increasingly lower levels in my system. It was not traumatic. It was not reckless. It was humane. And it was the kind of health care I deserved as a patient.

I am a huge fan of Dr. Lynn Webster, the author of the book The Painful Truth, and an expert in pain management who advocates on behalf of chronic pain patients. There IS a better way, as this article by two of his medical colleagues point out, and the time is now to course correct. Losing chronic pain patients to suicide or allowing them to suffer needlessly is not acceptable friendly fire. We can and must do better.

One of the hardest things about the past 11 years battling chronic pancreatitis – harder than the gut wrenching pain, the nausea, the inability to eat without setting off a chain reaction of symptoms – is the loneliness. Even surrounded by family and friends who love me, and who have been there for me over and over again, I often feel alone.

Chronic illness does that to you because much of what goes on when you’re sick happens internally. And I’ve gotten very good at keeping a lot of that hidden. I don’t want the world to see me only as this “sick” woman. I don’t want people to give up on me, and so I put on a face to the world that is often far from the woman I feel.

Now imagine being a child. Imagine experiencing all these horrible symptoms from a disease that has no cure, and trying to understand why your body is failing.

The loneliest people I see are those whose child (or children) are battling pancreatic disease. Their faces reach me like a beacon of despair, their pain hits me squarely in my heart.

There are few things more difficult than taking care of a chronically sick child. A child who is looking to you for the answers. That aching loneliness becomes a part of you.

The National Pancreas Foundation (NPF) provides hope for those suffering from pancreatitis and pancreatic cancer through funding cutting edge research, advocating for new and better therapies, and providing support and education for patients, caregivers, and health care professionals.

Founded in 1997, the National Pancreas Foundation is the only organization dedicated to a cure for all diseases of the pancreas.

The Cincinnati Children’s Pancreas Care Center is one of a handful of centers in the United States dedicated to caring for children with pancreatic diseases. Their multidisciplinary team treats patients from around the world, taking a centralized approach to provide diagnosis and effective therapies, including pain management.

According to their website: “Patients come to the center from across the country and around the world to receive expert diagnosis and advanced care for acute, recurrent and chronic pancreatitis, as well as pancreatic tumors, pancreatic insufficiency and pancreatic birth defects.”

The center works closely with the National Pancreas Foundation and is part of the #4 ranked GI Division in the nation by U.S. News & World Report.

My goal is to match the $5000 I raised for the NPF in 2015, but to do that, I’m reaching out to my village for help.

I need you.

The kids need you.

I’m asking you to join me by clicking here to donate to my campaign. There is no amount too small. No effort insignificant. I thank you, thank you, from the bottom of my heart.

As my disease progressed and my symptoms worsened, I became a “frequent flyer” at the ER – the term some ER staff use to refer to patients they believe are drug seekers.

The humiliation and lack of compassion I often encountered during those Emergency Room visits meant I would do anything to keep from going there unless the pain became unbearable.

My breaking point came at a family friend’s viewing. I vividly remember standing in front of his casket, looking down at this 82-year old man who had passed away, and wishing with all my heart it was me in there instead of him.

It was a watershed moment. That tenuous thread that held me to life was poised to break, and I was so very close to letting it take me down, take me away.

I don’t know what pulled me back from the brink of suicide. Certainly my love for my family and friends was a primary reason. But here’s the thing many people don’t understand: those of us who’ve walked that razor’s edge feel an overwhelming despair that we’re causing those we love to suffer. That we’re a burden.

Because sometimes we are.

In that moment I chose to get counseling before it was too late, because somewhere, deep inside me there remained the faintest hope.

Hope. Hope. A tiny, beautiful seed…There’s an old Mexican proverb that says: “They tried to bury us, but they didn’t know we were seeds.”

I clung to that hope and a chance for a better quality of life when, in November 2011 – six years since my life was dramatically interrupted – I went for a consultation at the University of Cincinnati Medical Center with a brilliant, well-respected and humble surgeon by the name of Dr. Syed Ahmad.

He was clear that I could be trading one disease for another called diabetes.

Door #1 – stay the course.

Door #2 – take a chance.

I chose the door out of pain, knowing I might be diabetic, knowing it meant a 9-10 hour complex surgery where they would remove my pancreas, spleen, duodenum, part of my stomach and restructure my entire digestive tract. Knowing it meant days in the ICU, weeks in the hospital, and a full year of recovery with no guarantee it would be successful.

I chose Door #2.

December 1, 2011 following my 10-hour surgery.

December 1, 2011 was the beginning of my “new” life. When I came out from the fog of anesthesia, despite the epidural, despite the pain medication, I knew something was different.

That deep, gnawing, blow torch, intractable pain was gone. It was gone.

They had me sitting up the next day.

They had me walking.

I walked every inch of the 9th floor of UC Hospital over and over and over again, dragging along my cumbersome IV pole as company. 21 laps around equaled a mile. It took me more than a week to manage that.

I had to learn how to eat again. Much of my digestive system was damaged, removed or surgically altered. “Food” through an IV caused me to vomit immediately and often.

Stop. Start. Stop. Start.

Until finally, I had my first real taste of food in months. And it stayed where it was supposed to stay. And I rejoiced in the magnitude of a body so resilient, so strong.

I left the hospital and made it home two days before Christmas.

I’d spent my 53rd birthday hooked up to IVs, monitors, and enough wires to make a giant bowl of spaghetti, and now I was home celebrating the holidays with my family. Best birthday present ever!

Seven months after my transplant surgery I was able to travel to Zurich for a month to be there for the birth of my daughter’s second child. Grandchild #4. Alice Mabel.

I was elated. I was scared. I was grateful. I was exhausted. But I was there.

Me in a field in Zurich, Switzerland.

It was the beginning of living a new normal – a life somewhere between the once healthy me and the woman who had physically hit rock bottom.

Now, nearly five years later, I’m totally off Fentanyl and Oxycodone. It took a year to wean off these powerful narcotics – and no, I didn’t have to go to rehab to do it. Without the excruciating pain, I just didn’t need them anymore.

I still have pain, but for the most part it’s manageable, and related more to the damage the disease did prior to the surgery. I still have digestive issues and difficulty absorbing nutrients, which means I’ll be taking pancreatic enzymes and managing my symptoms for the rest of my life.

I am an insulin dependent diabetic, but my sugar levels are fairly well controlled – something that wouldn’t be possible without the islet cell transplant.

My motility issues due in part to prior damage and the restructuring of my digestive tract, means I have days when I can’t do much more than hug a heating pad.

My husband ended our marriage in 2012, not even a year after the surgery, and I’ve moved to a new state to be closer to my transplant team.

But I’ve gained so much more than I’ve lost, and there’s real beauty in that – in hitting the wall and deciding to take just one more step. And another. And another.

A new normal

Am I the same as I was before the surgery? Before chronic pancreatitis took hold of my body?

No. I’m not.

I’m me, but different.

It’s a new normal I’m still learning to navigate, but it’s one filled with grace, resilience, and extreme gratitude.

Because, if nothing else, this disease has taught me that I am a Warrior. Those of us with chronic illness and chronic pain are all Warriors.

Would you be a love and click here to support my fundraising efforts on behalf of kids with pancreatic disease and the National Pancreas Foundation? I’ve set a lofty goal to match the $5000 ($5057 actually) I raised in 2015, and this is so personal for me.

Any amount you choose to contribute will make a tremendous difference in the lives of those who are suffering. It does take a village. It does take a tribe, but each of us sows the seeds of hope and can make a real and lasting impact.

By late fall 2005, my physical symptoms began to dramatically affect my day-to-day life. I couldn’t continue to tell myself it was just stress or that I was “run down.” I began my quest in earnest to discover what was happening inside my body.

It’s also when I discovered that even doctors don’t have all the answers.

And so, I began my journey down the rabbit hole.

The next two years were spent going from specialist to specialist, each of whom ruled out whatever common disease they thought I was suffering from. The usual suspects: IBS, diverticulitis, gall stones, ulcer, stress.

A few doctors listened, but most were trying to fit my symptoms into a neat little box, and when that didn’t give them the answer they expected, I was suddenly off their radar.

According to a friend of mine who is a cardiologist, doctors are trained that when you hear hoof beats, think horses, not zebras. The doctors I’d seen were looking for a horse, but maybe, just maybe, I was a zebra.

Climbing Mt. Kilimanjaro was a walk in the park compared to the mountain I was scaling now.

I felt like I was free falling: in unrelenting pain, scared, forsaken, defeated. As time went on though, I got mad. There’s nothing like a little righteous anger to help you garner some strength.

After the removal of my gall bladder in the spring of 2007, and things became worse, I’d had enough. I went online and researched the top Gastroenterology hospitals in the U.S. The email I drafted explaining my symptoms, tests I’d had done and their results, and my recent surgery, was sent to the department heads of five of them.

While my own local doctors wouldn’t return a phone call, four of the five department heads replied to my email within 48 hours offering to help.

Hope.

Slowly, ever so slowly, I was making my way out of the rabbit hole.

Johns Hopkins was the closest of the five top hospitals to where I lived, and in the early summer of 2007 I made the first of many 3-hour drives to see if they could help me find an answer.

They did, but it wasn’t the answer I wanted to hear, since it meant discovering I had a progressive, incurable disease. After more that two years of acute, debilitating symptoms, my disease had a name: Chronic Pancreatitis.

Between July of 2007 and 2010, I went through a half dozen endoscopic procedures, a sphincterotomy, several stent placements in my pancreatic duct which promptly occluded or migrated to who knows where in my body, an open abdominal surgery to exclude cancer, and a bilateral dissection of the nerves around my pancreas in an effort to diminish the pain.

I was taking pancreatic enzymes to help me digest food, higher doses of narcotics to try to dull the incessant pain, and eventually was being fed through a PICC line in my arm. Drip. Drip. Drip. 12 hours at a time.

My life no longer felt like my own. Who was this now 100-pound woman who had to give up her career because she was too sick to even sit behind a desk for more than a few minutes; whose hair was falling out; whose nails were weak and brittle?

And there were losses that stretched well beyond my career…

There was the loss of friends, many of whom grew tired of my “always being sick” and canceling out on plans at the last minute.

There was the loss felt within my family, who tried to understand and be supportive, but who wanted the “fun” me back. I felt the loss of intimacy with my husband, who was drifting farther and farther away.

I’d lost the ability to be spontaneous or plan for the future.

There was so much grief…

For the active woman I once was, who now spent her days lying in a fetal position, heating pad over my stomach, praying for the pain to go away.

Grief for the times I couldn’t spend playing with my grandkids. Grief for my “me-ness.”

There was so much shame and guilt…

For not pulling my weight.

For needing others to do for me what I used to do for myself.

For wanting to give up.

Hope was a slender, slender thread and I was white-knuckling my way through each day, each hour, each minute.

Even with high doses of Fentanyl and Oxycodone, my pain hovered around a 7 out of 10 on the pain scale. A really good day was a 3. But there were fewer and fewer good days, and I had begun settling for a few good hours.

Would you be a love and click here to support my fundraising efforts on behalf of kids with pancreatic disease and the National Pancreas Foundation? I’ve set a lofty goal to match the $5000 ($5057 actually) I raised in 2015, and yes, it’s personal.

Any amount you choose to contribute will make a tremendous difference in the lives of those who are suffering. It does take a village. It does take a tribe, but each of us sows the seeds of hope and can make a real and lasting impact.

As part of my mission to raise funds and awareness around pancreatic diseases, I’m sharing a story with you over the next few days. It’s a story about a life interrupted by an insidious disease, and the discovery of how deep-seeded is this thing we call “Hope.”

It’s June 2000, and that Cheshire cat grin on my face in this photo is because I just spent a week climbing Mt. Kilimanjaro, the tallest peak in Africa, rising 19,340 feet.

Yes, I did (she says with just a trace of pride and amazement).

Many of my friends and family assumed I was in the throes of a midlife crisis, since I was 41 at the time, and had never done more than day hikes at 8,000 feet or less. For you mathematicians who are adding up the numbers in your head right now, yes, that makes me 57!

Fast forward several years and I was working as an executive with a national non-profit organization, putting in 50+ hour weeks and spending many of my days traveling.

Newly remarried, with two grown kids who had flown the nest, I shared our home with my husband, my elderly mom, 2 ginormous dogs and a 10-year old foster child.

Life was full and satisfying. And rarely dull.

But by November 2005, mysterious intense flares of stomach pain, nausea, vomiting, bloating and bowel problems began plaguing me on a regular basis.

It often reduced me to a woman lying on the floor of a public bathroom for hours at a time because my symptoms were so bad I had no other option. When you’re that sick, dignity and concern for germs are casualties to the cause.

It hurt to eat. A lot.

The pain in the upper right side of my abdomen radiated through to my back like a hot poker, sometimes wrapping around my lower back like a vise tightening to the point I thought I’d surely break in half. It was a deep, boring, blow-torch kind of pain.

I’d take a couple of bites of food and be too full to eat any more. I lost 20% of my body weight in three months, and went down four dress sizes in rapid succession. The scale hovered at 100. At 5’5″, I’m small-boned, but I didn’t look “fashionably” thin. I looked gaunt and hollow.

It was the beginning of my journey down the rabbit hole.

Part 2 coming up tomorrow…

******

Would you be a love and click here to support my fundraising efforts on behalf of kids with pancreatic disease and the National Pancreas Foundation? I’ve set a lofty goal to match the $5000 ($5057 actually) I raised in 2015, and yes, it’s personal.

Any amount you choose to contribute will make a tremendous difference in the lives of those who are suffering. It does take a village. It does take a tribe, but each of us sows the seeds of hope and can make a real and lasting impact.